The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
First, my wife Jane and I wanted to announce the birth of our child, David Daniel Ware.
That's right, "Baby Ware" was born on 27 September 2012
John Denver-"Follow Me"
It was our good friends Stella and Jan over at HDTrainwreck who broke the news to the blogsphere. To two very good friends of ours, great scoop!
So in some of the worst taste I've ever exhibited here (especially considering how much Jane dislikes not only their music but local Martin L. Gore in particular):
Depeche Mode-"Black Celebration (Live at Wembley 1986)"
A few quick notes:
We had a friend who was homeless for two
and a half months. She now is sharing a house with two other sober
women. Who says good people are always punished? I'm so happy as her new
home is much nicer than her old one where she was being emotionally
abused.
In the meantime we saw the best of humanity come out. Jane took her out to have her hair done and helped spend some girl time with her. Another friend helped her keep her telephone service. Finally, a male acquaintance took her out to shop for some clothing to make her feel better about herself. Several other friends donated their living rooms, floors and any other space while she waited to get into the shelter. She even spent a couple days in our crowded house, not minding that every time one of us breathed we nearly kicked her we were so overflowed.
Bananarama - "Na Na Hey Hey Kiss Him Goodbye"
So you may be wondering why I disappeared for so long. It has everything and nothing to do with Huntington's Disease. Like many people with HD, I am a creature of habit. Between the move, my sister's gene positive HD test result, David's birth, Dan's move into our home for a short period of time and the lack of internet for a couple of weeks, my habits were basically broken into five easy pieces. It is taking me all this time to start to get back into my old habits. Even now, it has taken me three days before I got enough written to even post my first video here.
Elton John-"Circle of Life"
This song is a shout out to Dahy's mother Corrine who has relocated from Belfast to help Jane in her last months of pregnancy. She was so happy to have had the chance to see her grandson DJ sing in his recital. It went off without a hitch in spite of his large cheering section.
Its great to be back, now if I can keep in the habit of coming here on a regular basis I will be happy.
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
I finally got some some sleep, or I could say I crashed and burned. By nine pm I was knee deep in sleep. It was nice!
My sleep cycle readjusted, and I woke up bright and early. The downside is that my telephone is still sitting at 61% charged. Oh well, so is life. Just another excuse to stay in bed and read.
Band Aid-"Do They Know its Christmas"
I remember this record. I bought it, brought it home and put it on my turntable looking at the sleeve. I was surprised at the intricate design with so little time to design it. Overall, it was a nice little package.
David Bowie & Bing Crosby - "Little Drummer Boy/Peace on Earth"
Later today is a Christmas Party. I left an open open RSVP with the host. As much as I love this particular group and the party- the larger the group, the worse my physical symptoms lately. Its something I know I should be confronting but I'm not necessarily ready to do that.
Van Halen-"Right Now"
I love this song. Its on my list of empowering music. It reminds me that I can be here doing what I need to for myself or some where else. I want to be here, where I am, "Right Now".
The next three songs are the current contenders for our wedding. If you have a favorite, let me know which one and why in the comments.
John Denver-"Follow Me"
I had forgotten this one until Jane brought it up when we discussing music. I don't know where I was exposed to this Denver song, but it was soon after my arrival in America. All I know is that in my mind I had always told myself that when I find the woman that's in this song I'll know she's the one. When I met Jane...you got it, she was the woman in this song. I didn't tell her this until three years ago as I didn't want to scare her away LOL.
Next...
Stevie Nicks & Don Henley-"Leather & Lace"
Its offbeat, but so are we. Its also speaks of a strong woman with her own life separate from her lover, and a man who is not afraid to show to her his emotions. It also has a silly, literal meaning for us. When we first started dating, she was renting a house with two other girlfriends. We now own that house and the two former roommates will be her matrons of honor. I literally "walked into your house, and knew I'd never want to leave"
This is the current taker for first place:
Noel Paul Stookey - "The Wedding Song"
Yes, it has some religious references but I don't have a problem with them. With my spiritual uncertainty at most they it will always represent a snapshot of my life at the time we were married. If I spiritually move in any direction I see myself moving toward the spiritual side not the radical atheist side. Jane has always been a spiritual (not religious) person and really loves this song. Also if we chose this song and either of us move away from that point of view before the ceremony we can always revisit our choice at that time.
On another note, before I play one last Christmas song, yesterday evening Jane and I had another discussion. She wanted to revisit the issue of having children.
No real problem here. I've had a vasectomy and we both know the chances of having that reversed.
Did I tell you she had done her homework?
Yeap, she brings to the table a pile of information on pre-implantation genetic diagnosis-in vitro fertilization treatments, and the fact her health plan covers this procedure. That's a mouthful, huh? What PGD-IVF consists of is conceiving embryos in a petri dish and testing the embryos for Huntington's first, then only implanting the ones that have tested negative.
Also, in IVF they can use a little needle to extract the sperm (OUCH!), so having a vasectomy doesn't stand in the way of the procedure.
Now, actually I don't have any problem with this, well outside of the needle part. Its just, well, I never thought that I could be a father.
Paul McCartney will be our double feature today.
Paul McCartney-"Put it There"
Last time I played this on my blog it was
about my Godson, as I thought
that was the closest I'd ever be to having a child.
Have a dreamed about it? Actually yes I have. After Jane and I last talked about this topic I had several dreams about being a dad. Its something I'd love to be, but its just that this has always been a bottom-of-the-bucket-list-sort-of dream, you know? Now its one tiny, well more than tiny, step closer to becoming a reality.
I told her to go ahead and start what she needs to on her end, I'm good to go on mine. Her mouth dropped open. I leaned over and closed it. She hugged me and then nearly passed out. She really thought there was a good chance I was going to say no go. I told her that she doesn't need to second guess me, if she thinks I'll say yes, she's probably right. And then I told her if she hadn't already made the appointment I'd give her ten bucks because I know her that well. She admitted she had, that it was Monday and that's when I told her we aren't getting married because we don't know each other, after all.
Paul McCartney-"Maybe I'm Amazed"
John Lennon-"Woman"
To to be a sneak I slipped this in her IPod alarm clock this morning.
Here are two Christmas songs to lead you out this afternoon. They are as different as can be.
A Cold War favourite Weird Al-"Christmas at Ground Zero"
I woke up this morning in a rather foul mood. Actually I still felt flatlined. As I began making my coffee an amazing thing happened. I looked down and realized here I was sleeping in until noon, in my pajamas, having time to enjoy my coffee, with a full wallet for my grocery shopping later. What do I have to complain about? You know, I was right. I don't have $hit to complain about. So good morning. Now let's start this blog out on a better, my happy note. Literally as well as figuratively.
I really felt this homemade video of stills caught Bob Denver's energy.
"Sunshine On My Shoulders"
There were a couple things on my Facebook this morning that made me smile with my breakfast.
First was this video with the caption that says it all.
"This is the old generation passing the message on to the new one."
David Crosby and Graham Nash singing "Teach Your Children"
The Second was this Webpage of absurd signs. Click Through the image for the page.
This is a terrible thing to say but death has been on my mind a lot lately. I've tried to deny it but its not something that simply goes away. I am thinking of my future and the future of ones I love more than is necessary. When my mind drifts it drifts back to what happens, if anything, to me after I die. This has been going on pretty much since I got my test results followed by my hospitalization. They were really the nails in my mental coffin and my mind has been nearly OCD on the topic ever since. I want it to go away so I can think of prettier things in life, but unless I go out of my way to change my thinking my mind is stuck on the big D.
Johnny Cash - God's Gonna Cut You Down
To complete this double feature:
"It was no longer my song anymore. It was a great honour." Trent Reznor of Nine Inch Nails on
Johnny Cash covering his song "Hurt".
One of the most wonderful thing's Glenn Campbell has given this generation is a face and voice to Alzheimer's Disease. By speaking out so soon after his diagnosis he is showing the world that there is life after the horrid visit to the doctor in which his entire life shifted from living to surviving.
This song brings up a funny memory. I was working one day in the shelves at the library and ran into some book that put this song in my mind. I was quietly humming it when a student came up to me and made a crack about me becoming "Americanized". What people often don't know is that for some oddball reason country music is fairly popular in the UK. This song was in the top 5 and I remember hearing it on the radio a lot when I was a small child. With its simplistic and clear lyrics it became a favourite for this 6 year old.
Glenn Campbell-"Rhinestone Cowboy"
Wow, that last song really just came out from behind my mental left field. I have no idea how I came up with it. I must say spending time visualizing this city boy singing Campbell in his little British accent did make me smile.
To see how strong an influence is, here is Human League's Empire State Human. It starts with Adrian Wright's choice of graphics: a photo of John Wayne with the words "Empire State Human" printed on it. This band is about as British anti-country/Citified as one can imagine. Yet there Wayne is, in all his American glory.
The Human League-"Empire State Human"
On top of having this OCD thing on death, I've been homesick. This week I've been looking at prices to fly home for a couple weeks via BA. Sure, I could save a few dollars by going through Expedia or one of those discount airlines, but I don't trust buying tickets with all these fees for baggage versus carry-ons versus J's purse. It is really insane looking at all these fees. Two tickets, four pieces of baggage and two normal size carry-ons, thank you very much. Its already enough to have to check what little we want to bring on with us against the TSA website and having to go through the scanners.
The current plan is for us to stay in London for a week and a half. My brother, his wife and my nieces and nephews will be in the city for nearly a week. We could sandwich our days around his holiday, and it will save driving up to Sheffield. Since I'm no longer driving that would be a big mess avoided. J has never driven on the left side of the road and for obvious reason's doesn't want to have to start now. Neither of us want to take the National Express.
On the other hand, I don't want to fly all the way and NOT go home at least for a day or two. It simply doesn't make sense and would likely leave me just as homesick.
Yet still, I need to spend some time with the kids and my brother. I need some time with my family while I still can appreciate it, and as yesterday's blog shows those days are already farther apart than I'd like to admit.
The only other option at this point would be to fly over alone for the holiday. That would save me a lot of money and I'd be safe to travel at my leisure without anyone to report to. I want to drive, I drive. I want to take public transportation, I take it. I could meet up with my brother in the city and ride with him back to Sheffield. The only problem (outside of the fact I don't feel safe driving) is I'd be reliant on his good graces and I'm sure he'd be very sick of seeing me for over a week even if I was staying in a hotel.
Nah, that last one's not going to work for a number of reasons. Scratch it off the list.
Earlier today I was making lunch and jamming to The Best of Sparks when a Moroder driven No. 1 Song in Heaven came on. (recurring theme-D-E-A-T-H) I'm jamming away and totally forgot J was coming home for lunch. Crap she scared the shit out of me! Imagine me making my little old sandwich screaming "Gabriel's plays it, God how's he plays it!!" and then a meek "hello hon?" during the synth break. I'm too jumpy lately. You should have seen the hole I left in our ceiling.
Sparks-"No 1 Song in Heaven"
R.I.P. Mama Cass Eliot-"Dream a Little Dream"
Now I'm just throwing some tunes onto the virtual turntable here. Its nearly 5 O'Clock and I've accomplished less than nothing. Still looking at plane ticket prices, spent an hour with a friend watching her watching the announcement of the pregnancy of Michelle Duggar which I could give a crap about but my friend does care about. She claims its an interest based on her major of Psychology. I call her full of bull$hit.
Do I really care if that woman chooses to risk her her life for religious or financial gain? I only care insomuch as if we restrict her from having children on any grounds, it would make it easier to restrict others who do less wrong in the future.
So for baby and mother, I hope they both arrive safe and healthy and that's the end of that.
The Beatles-"Oh Darling!"
For the third time today I'm trying to get my brain into gear and head off to the grocery store. I just can't do it. My head starts thinking of one of a few re-occurring themes (the D word) and I'm back on my bed, feet behind me, awash in anxiety and curled up like a bow.
Gary Numan-"Cars"
Here in my car
I feel safest of all...
Pet Shop Boys - "Opportunities (Let's Make Lots of Money)"
I've literally kicked the bed when my anxiety started to cause the nerves in my ankles to tingle. Now I'm tired, spent time holding my pillow, tried to cry it out and I still can't get out of here! ENOUGH!!!!!!!
I'm tired.
I'm tired of doing nothing and being drained of all energy.
I'm tired of being an unproductive human being,
of my level of activity being judged by some external rule..
